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Background: The literature on the ethics of biobanking often overlooks the practical operations of biobanks. The ethics of stewardship requires that biobank resources are used to conduct beneficial science. Networked biobanks have emerged to increase the scientific benefit of biobank resources, but little is known about whether and how operations of networking may accomplish this goal. Methods: As part of a larger study on the ethical, legal, and social implications (ELSI) of networked biobanking, we conducted 38 interviews with representatives of 31 networked biobanks. Interviews explored operations of the networks. We used thematic analysis to examine how respondents describe three topics associated with stewarding biobank resources—funding, utilization, and sustainability. Results: Our results highlight that funding, utilization, and sustainability are critical not only to the operation of biobanks, but also to the ethical obligations that biobankers owe to stakeholders to steward the resources. Based on prior research, we hypothesized that respondents would describe networking as beneficial to increasing funding, utilization, and sustainability of the network. Respondents generally found value in networked biobanking, but networking did not necessarily increase funding, utilization, and sustainability. Conclusion: The results presented here support inclusion of funding, utilization, and sustainability as topics of ethical concern in the practice of biobanking and networked biobanking. These issues are rooted in the stewardship obligations that biobankers feel to their partners, client investigators, and participants. The goal of promoting stewardship through networking requires significant time and effort to build governance models that honor the obligations of each individual biobank to their donors and advance the collective goals of the network. We conclude with suggestions offered by respondents to address improving these aspects of stewardship. [ABSTRACT FROM AUTHOR]

Heritable human genome editing has garnered significant attention in scholarly and lay media, yet questions remain about whether, when, and how heritable genome editing ought to proceed. Drawing on interviews with scientists who use genome editing in their research and professionals engaged in human genome editing governance efforts, we examine their views on the permissibility of heritable genome editing and the governance strategies they see as necessary and realistic. For both issues, we found divergent views from respondents. We place the views of these scientists and governance professionals within the context of the larger bioethical discussion of heritable genome editing governance, along a continuum of hard to soft approaches. These respondents' views highlight the challenges of various hard forms of governance and the potential virtues of soft governance approaches. [ABSTRACT FROM AUTHOR]

We demonstrate the fruitfulness of using card sort activities as an engagement method by detailing community consultation for ethical, legal, and social implications of sociogenomics. Readers are provided with a user-guide for card sort engagement through: (1) an overview of the card sort activity and its merits for engagement, (2) detailed methods of sorting for values-elicitation and prioritization goals, and (3) strategies to design this approach for other participatory research designs. Our intent is to add to meaningful exchanges between community engaged researchers and empirical bioethicists. [ABSTRACT FROM AUTHOR]

The article focuses on the ethical concerns regarding the potential group harms caused by genomic research, particularly in the area of sociogenomics, which aims to understand genetic contributions to social and behavioral traits. It highlight how key regulations and research practices neglect to consider the impact on LGBTQ+ communities and other groups, particularly when such research leads to discrimination, criminalization, or eugenics.

While somatic cell editing to treat disease is widely accepted, the use of human genome editing for "enhancement" remains contested. Scientists and policy‐makers routinely cite the prospect of enhancement as a salient ethical challenge for human genome editing research. If preventive genome editing projects are perceived as pursuing human enhancement, they could face heightened barriers to scientific, public, and regulatory approval. This article outlines what we call "preventive strengthening research" (or "PSR") to explore, through this example, how working to strengthen individuals' resistance to disease beyond what biomedicine considers to be the human functional range may be interpreted as pursuing human enhancement. Those involved in developing guidance for PSR will need to navigate the interface between preventive goals and enhancement implications. This article identifies and critiques three of these ideas in the interest of anticipating the wider emergence of PSR and the need for a normative approach for its pursuit. All three "candidate criteria" merit attention, but each also faces challenges that will need to be addressed as further research policy is developed. [ABSTRACT FROM AUTHOR]

1 | INTRODUCTION In 2009, the South East Asia Research Collaboration in HIV (SEARCH) at the Thai Red Cross AIDS Research Centre began diagnosing and treating individuals with acute HIV [...], Introduction: The South East Asia Research Collaboration in HIV (SEARCH) RV411 clinical trial in Thailand was a systematic investigation of analytic treatment interruption (ATI) in individuals diagnosed and treated since Fiebig stage I acute HIV infection. Here, we explore decision-making processes and perceptions of trial participation in a phase I trial that raised important ethical considerations, to identify potential areas of improvement in this relatively new field of HIV research. Similar considerations apply to other HIV phase I trials, especially those involving ATI, making this trial a model to identify challenges and opportunities in promoting informed choice. Methods: Using longitudinal semi-structured interviews and a validated questionnaire, we examined how decisions to join or decline the trial were made, whether there was evidence of decisional conflict, and reactions to the trial outcomes. We also explored contrasting views and experiences in this small trial cohort. We report analyses of data from these questionnaires and interviews, conducted from February through December of 2016 with the 14 SEARCH cohort participants who either joined (n = 8) or declined (n = 6) participation in RV411. Results: The eight participants and six decliners had low overall decisional conflict, which remained low over time. Decision making was more difficult for decliners than participants, at least initially. While all interviewees described being satisfied with their decisions, our study identified important negative consequences for a few individuals, including seroconversion, negative experiences with optional procedures and disappointment due to rapid viral rebound. Conclusions: Although our results reflect the experiences of a small group invited to join this trial, our overall finding of low decisional conflict even while some individuals reported negative experiences provides lessons for clinical trial investigators. We developed points-to-consider in helping participants make informed choices, to support participants during the trial and to support decliners in their decisions. Keywords: phase I clinical trials; HIV clinical trials; analytic treatment interruption; research ethics; informed consent; qualitative research

Translational research has tended to ignore the question of whether receiving a genomic diagnosis provides utility in community care contexts outside of doctors' offices and hospitals. However, empirical research with parents has highlighted numerous ways that a genomic diagnosis might be of practical value in the care provided by teachers, physical or occupational therapists, speech‐language pathologists, behavior analysts, and nonphysician mental health providers. In this essay, we propose a new conceptual model of genomic utility that offers the opportunity to better capture a broad range of potential implications of genomic technologies for families in various social and organizational systems. We explore crucial research directions to better understand how redefined utility might affect families and nonphysician professionals. [ABSTRACT FROM AUTHOR]

Children with disabilities and rare or undiagnosed conditions and their families have faced numerous hardships of living during the COVID-19 pandemic. For those with undiagnosed conditions, the diagnostic odyssey can be long, expensive, and marked by uncertainty. We, therefore, sought to understand whether and how COVID-19 impacted the trajectory of children's care. We conducted semi-structured qualitative interviews with 25 caregivers who, prior to the pandemic, were on a diagnostic odyssey for their children. Most caregivers did not report any interruptions to their child's diagnostic odyssey. The greatest impact was access to therapy services, including the suspension or loss of their child's in-person therapeutic care and difficulties with virtual therapies. This therapy gap caused caregivers to fear that their children were not making progress. Although much has been written about the challenges of diagnostic odysseys for children and their families, this study illustrates the importance of expanding the focus of these studies to include therapeutic odysseys. Because therapeutic odysseys continue regardless of whether diagnoses are made, future research should investigate how to support caregivers through children's therapies within and outside of the COVID-19 context. [ABSTRACT FROM AUTHOR]

To purchase or authenticate to the full-text of this article, please visit this link: http://dx.doi.org/10.1111/j.1468-5906.2008.00398.x Byline: MICHAEL T. WILLOUGHBY (1), R. JEAN CADIGAN (2), MARGARET BURCHINAL (1), DEBRA SKINNER (1) Abstract: This study evaluates the psychometric properties and criterion validity of the Religious Social Support (RSS) Scale in a diverse, representative community sample of new mothers (N= 1,156). Results indicated that two factors best represented the RSS. Criterion validity was established by demonstrating that the RSS was associated with relational and health outcomes. However, these associations were reduced to statistical insignificance once a general measure of social support was included as a covariate. There were no indications that race moderated either the psychometric properties of the RSS or the relationships between social support and outcomes. Qualitative analyses indicated that religious social support is a salient construct in the lives of women that we studied and suggested ways to improve future developments of RSS scales. Author Affiliation: (2)R. Jean Cadigan was affiliated with the Center for Developmental Science, University of North Carolina at Chapel Hill, Campus Box 8115, Chapel Hill, NC 27599-8115. E-mail:rjcadigan@gmail.com (1)Michael T. Willoughby (willoughby@unc.edu), Margaret Burchinal (burchinal@mail.fpg.unc.edu), and Debra Skinner (skinner@mail.fpg.unc.edu) are all based at the FPG Child Development Institute, University of North Carolina at Chapel Hill, Campus Box 8185, 521 South Greensboro Street, Carrboro, NC 27510. Article note: Correspondence should be addressed to Michael T. Willoughby, FPG Child Development Institute, University of North Carolina at Chapel Hill, Campus Box 8185, 521 South Greensboro Street, Carrboro, NC 27510. E-mail: willoughby@unc.edu

The article discusses the significant transformation in the presentation of prenatal development due to the advancement of biotechnologies and prenatal diagnosis examinations. It mentions the ability to understand biological processes and intervene in them is closely connected and has amplified this impact. It explores the possibility of modifying the characteristics of offspring has emerged due to these advancements.